SoundCure Serenade Tinnitus Treatment System

[Karl]

I'd be really interested in what the Gabapentin does for T.

Louise -
Neurologists prescribe gabapentin for nerve injuries and chronic nerve pain. Some people who suffer from those problems also have tinnitus.. There was a letter in the ATA's "Tinnitus Today" written by someone who has a lesion on his brain stem. Gabapentin fixed his tinnitus.

There have been studies that gabapentin is ineffective for people without those types of neurological problems.

 

[Louise]

Hmmm. Another anti-convulsant, Carbamazepine is sometimes prescribed for T. I read some posts where people took it for their primary condition and then realised it had gotten rid of their T as well. I wouldnt have thought that you'd have to also have the primary condition these meds are prescribed for to have it work on the T?

 

[just1morething]

Hi Hiss1,

Are you just starting with Gabapentin and Klonopin at the same time as the Soundcure? Or have you already been taking the drugs before?

I'd be really interested in what the Gabapentin does for T.

Hi Louise,
I had taken Gabapentin + Klonopin for quite some time. It seem to work very good when I first started it ,maybe a year ago. It made me tired at first, but then I got more used to it and I was not so sleepy.
I am not sure it is the answer though because sometimes it don't work at all. Perhaps the T outsmarted the
the drugs, or the brain built up more tolerance for it.

 

[Louise]

Thanks Hiss. I know tolerance builds up for Klonopin as its a Benzo but I didnt think tolerance would build up for the anti-epileptic meds. Can I ask, did you start both Gabapentin & Klonopin together?

 

[just1morething]

Thanks Hiss. I know tolerance builds up for Klonopin as its a Benzo but I didnt think tolerance would build up for the anti-epileptic meds. Can I ask, did you start both Gabapentin & Klonopin together?

Louise,
I think I started taking Gabapentin after seeing I neurologist for neck pain. When I talked to a tinnitus doctor in MN he said all he had to offer was steroid perfusions thru the eardrum or Gaba. + K.. I also talked to a world renowned tinnitus doctor in New York and he recommended the same sorta thru my doctors as he wasn't going to prescribe over the phone. He told one doctor I seen that I have brain based tinnitus if that makes any sense. I will send you the website on the Gaba. + K article.

 

[just1morething]

http://www.tinnitusjournal.com/detalhe_artigo.asp?id=49

 

[Louise]

Thanks Hiss. I have some Clonazepam and it works on me to reduce the volume down.

 

[Louise]

That report is a bit confusing. Makes it clear that GP is only/most effective for central tinnitus. Do you have central noises Hiss? Did you have to go up to higher doses of Klonopin at all?

 

[just1morething]

That report is a bit confusing. Makes it clear that GP is only/most effective for central tinnitus. Do you have central noises Hiss? Did you have to go up to higher doses of Klonopin at all?

I am not sure. It started in my left ear and then both so maybe it is central. Sometimes the noise moves around in my head also. I have been taking Gaba. 600+ Klonopin .5. I was told or read the Gaba. magnifies the Clonazepam.
I suppose the dosage varies between different people,even male or female, and possibly body mass. I am just guessing on this.

 

[just1morething]

I also had steroid injections or perfusions 6 times in left ear. I would not recommend this. I was desperate at the time.

 

[Louise]

I can understand that.

Did you get the injections soon after the onset?

Have you stayed on .5 of Clonazepam?

What country are you from?

 

[just1morething]

I can understand that.

Did you get the injections soon after the onset?

Have you stayed on .5 of Clonazepam?

What country are you from?

The U.S. in MN. I had the injections in Sept. 2010 at Paparella in Minnesota & July 2011 at Shea in Memphis TN. Mine started in 2008 I think from airflight from Chicago to Minneapolis. My left eustachion tube did not work well and I got a ear infection and fluid in my ear. It probably was the worse and my state of mine the worst in 2010.
I also had noise exposure from farming and possibly took ototoxic drugs for neck pain and anxiety. Yes. I pretty much stayed on .5K.
Are you from Europe some place ? Also ,How do you think you acquired tinnitus?

 

[Louise]

Thanks for the info. The steroid injections only work very soon after onset so I'm surprised they gave you them.

I'm in the UK. I got mine on 29th June last year when I watched a rock band in a local pub and it was way, way too loud. I was also stood next to a speaker for part of that time and hadnt realised as it was dark. I shouldve moved away from the front where the band and speakers were.

I've tried a few things but cant cope with the anxiety and panic so take Clonazepam now. I dont take it every night though as I dont want to build up a tolerance and end up needing a higher dose.

Have you found that the effect of GP & Clonazepam has worn off or is it that it works some days and some days doesnt? How much of a reduction in volume have you got from it do you think?

 

[just1morething]

Thanks for the info. The steroid injections only work very soon after onset so I'm surprised they gave you them.

I'm in the UK. I got mine on 29th June last year when I watched a rock band in a local pub and it was way, way too loud. I was also stood next to a speaker for part of that time and hadnt realised as it was dark. I shouldve moved away from the front where the band and speakers were.

I've tried a few things but cant cope with the anxiety and panic so take Clonazepam now. I dont take it every night though as I dont want to build up a tolerance and end up needing a higher dose.

Have you found that the effect of GP & Clonazepam has worn off or is it that it works some days and some days doesnt? How much of a reduction in volume have you got from it do you think?

I just took it in the last hour about, that is GP + K. The other day I thought I was cured. I felt normal again but it was short lived. I also was using the SoundCure Serenade. It seems my brain will allow different things to work one day, and then it is "rebooted" upon awakening as many others say also.
Yes, I think you maybe should not use it everyday if possible. That is what the tinnitus doctor in MN. told me. I think your brain will build a tolerance to it and it won't be as effective.
Is your ringing a mellow hiss or a piercing ringing as I have had both?

 

[Louise]

Mine has changed a lot since it started. It was a quiet (I didnt think so at the time) pure-tone. Then it changed to be a high frequency noise with a lot of high frequency darting sounds in it. Then the darts joined up into a sliding up and down noise. Then it became like a high-pitched dentists drill noise, coming in and out with a static noise behind it. At the moment its a very, very electrical noise that fills my ear. I cant hear what the other ear is doing (I have noise in both) because the left ear is so loud. I wish this nightmare would end

 

[just1morething]

Louise, Just remember I don't want to recommend anything to you such as gabapentin because I heard that can be ototoxic. Maybe is maybe isn't. As my primary doctor says all the time she does not want to prescribe anything that can hurt you

 

[Louise]

Dont worry about that, I've already done a lot of research into drugs that can possibly help and already knew about GP. I was looking at Carbamazepine instead though. Not that I'll be able to get a doctor to prescribe it as it would be an 'off-label' use.

 

[just1morething]

Mine has changed a lot since it started. It was a quiet (I didnt think so at the time) pure-tone. Then it changed to be a high frequency noise with a lot of high frequency darting sounds in it. Then the darts joined up into a sliding up and down noise. Then it became like a high-pitched dentists drill noise, coming in and out with a static noise behind it. At the moment its a very, very electrical noise that fills my ear. I cant hear what the other ear is doing (I have noise in both) because the left ear is so loud. I wish this nightmare would end

I understand you totally. If only we could go back in time but we can't. Have you used Daily Strength support on tinnitus? That is the one I have used since early Jan. I think this one is more comprehensive though. I very much understand your misery and believe I would like to vanish into nothing some days. I think yours may get better as time passes as mine did. I used to curl up in a ball in bed waiting for the noise to go away in the past.
It is a very diffucult thing to deal with ,thats for sure. It has been nice chatting with you and if need anything I am just across the pond.

 

[Louise]

Thanks Hiss

I only go on this one forum, though when Im googling things the DailyStrength has come up and Ive read things on there.

My noise is getting worse with time, that's what's scaring me so much. It was only in the left ear when it started and a month ago it started up in the right, after changing a lot in the left as well. Its so volatile. I wonder what Jastreboff would say!

I'm glad yours has improved over time.

Bed for me now (that awful struggle). Speak to you again

 

[just1morething]

Louise, I hope you have a better day tomorrow. By the way how do you like your SoundCure Serenade ? From what I heard you have one on trial. I am not sure about mine. I thought it was going to be a security blanket that I could go to.
The audiologist wants me mainly on the 1&2 settings just under my T. The 3&4 are more like white noise. I think I owe $1800 if I want it. My neck might be part of my problem also. I know you talked to many people on this forum, some a lot more technical than me. Have you had any good ideas? Talk to you again.

 

[Louise]

I have mixed feelings about the Soundcure. It helped at work when I had it in. Then I made the T worse by being in a noisy restaurant. After that the Soundcure was never the same even though we reset it twice. Then, one day last week I tried it again when the T was like a dentists drill and it changed the noise to a sort of moving coil noise but without the sharpness of the drill sound. Then the day before yesterday I used it and after 10 mins I got a lower pitched hum that was loud in my ear and I pulled it out. That noise lingered a bit then went. It couldve been coincidence but I darent use it again now.

I used to use it as a security blanket too. But I made the mistake of only using it in one ear and i think that's why the T ended up starting in the other previously ok ear.

I think my T is so volatile right now that I dont want to use anything on it.

I ended up keeping the device as it helped me one time over xmas and I was scared to give it back and have nothing.

 

[just1morething]

I have mixed feelings about the Soundcure. It helped at work when I had it in. Then I made the T worse by being in a noisy restaurant. After that the Soundcure was never the same even though we reset it twice. Then, one day last week I tried it again when the T was like a dentists drill and it changed the noise to a sort of moving coil noise but without the sharpness of the drill sound. Then the day before yesterday I used it and after 10 mins I got a lower pitched hum that was loud in my ear and I pulled it out. That noise lingered a bit then went. It couldve been coincidence but I darent use it again now.

I used to use it as a security blanket too. But I made the mistake of only using it in one ear and i think that's why the T ended up starting in the other previously ok ear.

I think my T is so volatile right now that I dont want to use anything on it.

I ended up keeping the device as it helped me one time over xmas and I was scared to give it back and have nothing.

My noise is pretty low this morning. I did take 900 mg GP last night and also 25mg Nortriptylene at bedtime. I used the SoundCure a little last night also. I think Nortriptylene can help some people also. I think I got 6 or 7 books on tinnitus. I will probably keep mine too. I also have a Samsung MP3 preloaded with nature sounds and all kind of music and I think 5 white noise. That was bought from a Tinnitus Clinic quite some time ago.

 

[Louise]

Yes, Nortriptylene has been noted as possibly helping T. Have you managed to suss out which drug is giving the best effects on it? There's GP, Klonopin & Nortriptyline that you take? How do you find Nortriptyline as an actual anti-depressant?

Have you had any effect from the Soundcure when you use it? Were you able to pitch match (I struggled with that).

 

[just1morething]

Yes, Nortriptylene has been noted as possibly helping T. Have you managed to suss out which drug is giving the best effects on it? There's GP, Klonopin & Nortriptyline that you take? How do you find Nortriptyline as an actual anti-depressant?

Have you had any effect from the Soundcure when you use it? Were you able to pitch match (I struggled with that).

Not for sure. I read some place that 50 mg Nortriptylene was good for severe T. I think it was from the Mayo Clinic which I am close to. I went down to 25 because it does cause some dry mouth. Sounds like your good with computers so you probably been to the Simply Noise website. I have a Ecotunes Sound & Sleep machine also. I like it better than the Brookstone one which has a bright light to it. I think Nortriptylene might help some for depression. I have tried the newer SSRI's but I did not like them. One person I know uses celexa but I didn't like it. He was a ATA reference person.

 

[Louise]

Which med would you say brings the T noise down?

Yes, I've been on the Simply Noise site, have two from there.

Think I might buy the Sound Oasis, that's been recommended as the best sound machine. You can also buy 2 separate cards for it which have different sounds on it, some weid stuff like a vacuum cleaner

 

[just1morething]

I looked at Sound Oasis on Amazon. That may be a good choice also with the 2 cards. I guess you never know till you have one. I am not sure on which med is the best, it might be pretty much trial and error for each person. Are you being seen at a good tinnitus clinic or just a audiologist? For me it might be Gaba + K + Nortrip. at night brings the noise down. Did you get some recommended drugs or other ideas from others on this website?

 

[just1morething]

Louise,
This is where I may go if I continue to have trouble.http://www.uihealthcare.com/depts/med/otolaryngology/clinics/tinnitus/index.html
It is about a 4 hour drive.

 

[Louise]

I'm just thrashing about myself really. I have seen a good audiologist & Hearing Therapist who really understand tinnitus privately. But we dont have anything here in the UK really. I have seen a Hearing Therapist on the NHS (Had to wait about 4 months for that appointment) and I know more than she does.

The most info I've got is from this good Hearing Therapist guy, this site and the net. I've researched the drugs that can help a lot on the net and that's why I'm so interested in someone who is actually taking the ones I've read about!! These are the others, other than the ones you take that are on my list.... Carbamazepine (anti-convulsant), Retigabine (Potassium Channel Opener), Pregabalin (Lyrica), Tianeptine (anti-D which reduces Glutamate), Acamprosate was high on the list until today when I had the email about the failure of a good trial in its use for T.

I can even get them prescribed here to give them a try. I've always been against drugs, preferring a natural approach but there isnt one for this and I cant cope with it so just give me the drugs!

That place in the link looks good. It would be nice to go there and know you're not alone with it, that someone more expert than you is looking into your case. Its all about money though isnt it, if you can afford to go to these places.

 

[Louise]

Oh I'm having CBT as well on the NHS. After 3 sessions (3 weeks) all I've got from that is that I have to 'be cognitive of my thoughts'. A waste of time so far.

 

[just1morething]

Oh I'm having CBT as well on the NHS. After 3 sessions (3 weeks) all I've got from that is that I have to 'be cognitive of my thoughts'. A waste of time so far.

I did try Campral which I think may be the last drug on your list. It was tested in Brazil I think. My doctor I was seeing at the time when I was really in dumps (a psychiatrist) seen it advertised in the local paper so he decided to try it. I guess it is used for alcohol withdrawal so he was familiar with it. He also had me on megadoses of effexor which really made me sick. The Campral made my head sound like a jungle.

The other drugs you mentioned I am not familiar with. I guess I heard of Lyrica but never tried it. Turning the Volume Down book is pretty popular. I talk now and then to a research person at the ATA and he said it one of their best sellers. I even emailed Kevin Hogan on help but he wanted $400/hour. In other words he wasn't interested. Their are a lot of people taken advantage of tinnitus sufferer's which is a shame. I talked to Jennifer Battaglino
once. I guess private conversations or email might be better on some topics. Maybe you know how to do that.